Tag: EDS

I thought I would give a little bit of insight into my life. I was going to say; “as an average spoonie”, but I don’t actually know if I am average. I think I do a little better than the average person with chronic illness, thanks to my upbringing with lots of sports, physio and nutrition, but again, it’s a spectrum. So how do I know? This is an average day in my life, and I am a spoonie, so there! Actually, my life changes almost every day, depending on pain and injury, as well as what I have going on, so I thought I’d pick a relatively quiet one, where I could write.

So, here we go.

7:00am: wake up and pull on some leggings, a jumper and some sneakers to drive BB to work (we share a car and it doesn’t make sense to pay for parking when we live pretty close). Feel pretty good because every day I’ve been getting thinner due to intermittent fasting, even though I haven’t moved on the scale. I guess I’m putting on muscle, which my body does way too easily for what I would like. Either way, it’s much better than being a blob for the better part of a year after surgery.

7:30am: Take a couple of minutes to descend the four flights of stairs, because my knee is somehow swollen and the patella is pulling to the outside – pretty painful and I don’t know why! Drink a black coffee with stevia on the way, and listen to BBC Dunia Pagi on the way back to practice my Indo.

8:00am: Arrive back at home and decide to address my knee issues instead of lying around all day waiting for it to settle down. Start off by foam rolling, then find Jessica Valant Pilates for Knees video and do that. It’s actually way better than I expected (because when you’re dealing with EDS you learn not to have any expectations, especially when it comes to something physical), and I can feel it really working my VMO, which is eternally atrophied, and nothing has been able to help. It’s the chief reason why I’ve had three surgeries on my knees to stabilise the patellae, and keep them from being pulled to the outside and dislocating due to overworked lateral quads. This video is probably the best workout I have ever done, and I have ZERO knee pain now! Frack yeah. Foam roll again to finish off.

8:30am: Turn the oven on and wash rice and put some sweet potato in the steamer with it while waiting for it to heat. Put the rest of the sweet potato in the oven. Having a little moment with sweety potates, since I found a recipe that makes them all caramelized and perfectly cooked, with minimal effort.

8:45am: Got on my stationary bike to do my usual hour of low intensity cardio, while watching Return of Superman. Find it’s easier than usual and I don’t even realise the hour is almost up. Nice.

9:45am: Shower and put on extra moisturiser since my skin is sucking everything up immediately, although has also been oilier..which means I gotta get some more hydration and repair, I think. It may just be changing my eating. We’ll see.

10:15am: Marinade chicken and make raw zucchini, pine nut, red onion and feta salad. Sweet potatoes and rice are ready…except for the steamed ones. Dang. Will have to find another recipe. Make my brekk and clean kitchen.

11:30am: Time to eat!

One slice of black pudding

One egg,

Leftover zucchini bits with nutritional yeast

Half a cup of rice

1/4 sweet potato

Zucchini salad

Bone broth spicy mushroom soup

I usually eat something like this after breaking my fast, with aloe vera juice, apple cider vinegar, lemon and soda water. Also trying to finish off this giant pack of fake Yakult we got from Hanaro Mart, which I suspect doesn’t actually have any probiotic qualities. Clean up the living room, and take my supps.

12pm: Check on my ma since she was in hospital and is going interstate tomorrow after her work laptop crashed, then read through a contract for work.

1:30pm: Start copying an old Miley Cyrus look since I’m out of practice and people say I look like her (what they leave out is obviously a chubbier version lol). Burn myself trying to curl my hair because I suck at it and damage and kink it up, only for it to return to complete straightness within an hour. Everything looks greasy and terrible, and my back is cramping like a binch trying to take photos. So, abandon it.

3:30pm: Feel super gross with all this makeup on my face. Not sure if it’s because of fibromyalgia, or if I’m just spoiled wearing good BB cream all the time, but I can’t stand layers of makeup anymore. It feels awful. Really want to wash this off, but I have to go out later.

Finish the zucchini salad, while blinking through the pain. What pain you may ask? For some reason I kept getting ulcers in my mouth recently, until I switched to using Lush Boom! Toothy Tabs, which works insanely well, and don’t make my mouth feel burned or unclean by the time I wake up like normal toothpaste. The ulcer boys are almost gone, but the red onion in this is spicing me up and burning my mouth raw (even though the actually spicy soup was fine lol), as well as burning my nose somehow. I’ve never had so much trouble with foods and products until the past couple of years, and it’s a never-ending trial of different ways around it. Take off my contacts and fake lashes at least so I can chill out a little, then start writing this.

4:40pm: Go pick up BB and get groceries, then have to go home because my back and neck are hurting like crazy! I didn’t even realise, but today is the first day in a while I haven’t had to take my medication in the morning as well as at night, but I’m definitely feeling it now. Picked up a natural deodorant that seems to have good reviews, so I’ll see how that goes.

Saturday, 22nd September: I had to take Gabapentin when I got home and forgot about writing. Such is the life of a spoonie, I guess. Now I can’t really remember most of what I did, even though it was just a few days ago. Probably not much different to what I usually do: make dinner, stream something while BB works, do some more work until brain fog hits and it’s too late for coffee, practice Korean and Indo, maybe draw something.

This week in general has been pretty good, though, I’ve been working steadily and quickly on a few different contracts, fasting intermittently without any problems, and somehow building way more muscle than I’ve actually been working for. Until yesterday, I felt like I was finally getting back to stability. I say until yesterday, because that morning, I suddenly realised I had a lot of trouble with the stairs again, and even to text on my phone with both hands, I needed to prop myself up on the kitchen counter. All my muscles felt fatigued, and 30 mins on the bike was almost more than I could manage.

After working through the morning okay, albeit shivering and my fingers stiffening up from a bit of a breeze outside (for some reason, my Raynauds kicks in when it drops just a couple of degrees lower than usual, and makes my fingers in particular super stiff and cold), I had to call it quits by lunchtime. So, I guiltily spent the rest of the day finishing God of War 3 and watching The Good Place on Netflix, eating Halo Top, until I picked up BB and bought groceries. Then, I guiltily sat on the couch, while he made dinner, feeling like a trash can. I picked the wrong time to wean off pain killers to help with my liver, with shark week coming up, as any kind of hormonal changes cause massive flare-ups for me.

Anyway, this has been a pretty long, dry, post with a crappy photo of my breakfast to break it up, so I’ll add this:

BB just told me that they’re bringing out an Invader Zim movie!!??!?

If you don’t know what Invader Zim is, it was a creepy cartoon on Nickelodeon in the early 2000s, which got cancelled for being too creepy. It’s about an alien who is banished to Earth under the pretence of colonising it, along with his defective robot. It’s my favourite childhood show, and shaped my humour. Nobody else I know likes it except my dad and brother, and think I’m weird, but I must have watched each episode at least five times. Finally, they’re making a movie, and I could literally cry, I’m so excited and vindicated (well, we’ll see how it is when it comes out). Fun fact: the voice of Zim is actually Daggett from the Angry Beavers! Yeah, I’m an old boy.

Not only that, I’ll leave you with some memes I found hilarious and/orthis week at 1AM by myself, which means they probably aren’t actually that funny.

Alright, I’m back. If you follow my Instagram, you’d know I posted a drawing of my side blog with my fiance and had kind of abandoned everything since.

However, I decided I would keep this handle for myself, for things that I’m interested in like makeup, and to talk about EDS. I had planned to make some posts for Ehlers-Danlos Awareness Month in May, but due to some health problems ironically, and moving since then, things have been insane. In fact, I’m writing this without internet, while I spend on excess GB of data in my new apartment. Suffice to say, it has been a journey. I do still plan to upload those EDS blogs soon, but in the meantime, as always, I’ll do a catch up.

First of all, I finally got a space for my own makeup vanity, complete with ring light and vanity lights! I’m honestly so spoiled by Boh, and I appreciate it all the more because for the past few years, I’d been doing my makeup my leaning over the bed and squinting into a tiny magnifying mirror whose light didn’t work. I didn’t want to be a first world schnip about it, but it did bum me out. This new set up is more than I could have asked for, although we’re still in the process of setting up the area. Moving was insane, and Boh now has shingles (!!!) from all the stress and work, so things are going slowly, especially while I’m pretty useless at helping much. Another thing to feel awful about, but I do what I can to make up for the areas I lack.

I’ll get to my health issues later, but I did want to show a particularly embarrassing photo to highlight the realities of my life. You see, I try very hard to appear normal, and more than normal, and I guess I do well, because people seem not to understand why I can’t do things or haven’t been able to reach the same achievements others have. Being ‘invisibly ill’, apart from the times I have mobility aids or have just come from my latest surgery, there’s not really a way people can see that. Usually it’s just being judged for using the lift to go a couple of floors while I awkwardly and guiltily try not to make eye contact – things like that.

Another way though, and I’ve spoken about this before, is that when I have digestive or hormonal issues, it shows up on my skin. It can be almost immediate, like a red flush, or take a few days to a week to show up, like hives, breakouts, or awful tone and texture, but it will definitely show up. And, in the end, it is my fault, because I know what not to eat in order to avoid it. But for some reason, I always trick myself into justifying things I know just aren’t good for me.

Something like this

Anyway, I’ve seen some girls doing Mab Graves (one of my favourite artists!) #sickgirlselfie for her #sickgirlsclub on Insta, and thought I’d do my own spin on it, to show a little of what I deal with, just on a day-to-day. Honestly, this is the least of my worries. I’ve had bad skin most of my life, and it’s always difficult, and never 100%, but it still is a confidence knocker when you’re doing everything else right, and something you ate a week ago pukes out through your pores. So, see my before and after for my go-to makeup. Since getting my eyebrows done (another post to come), on bad days I’ll even just wear BB cream and go, since I won’t see many people anyway, but this is what I’ll normally do if I’m going somewhere with friends.

Blegh 😐

Dang embarrassing, but I want my blog to be a place of honesty, sharing and even advice for other people going through the same things. You probably won’t see me being some crazy perfect Instagram angel, and that’s not really something I want, anyway. I’m always seeking the truth, and the best that can possibly be had in reality. I have nothing against airbrushing, makeup, plastic surgery, etc etc etc, but I don’t see any reason for hiding the reality or the process, either. I figure the people who I would want to share my life with would understand my explanation for things, and if they don’t, well, we don’t have to agree or get along.

Just my thoughts. Let me know if you have similar experiences or have any tips or hacks to share!

xo Lo

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About Me

Hi!

I’m Lola, a qualified Beauty Therapist based in Australia. I have Hypermobile Ehlers-Danlos Syndrome, and aim to live the fullest life I can, while managing my health issues. I hope I can help others who are dealing with similar things!